Barts Cancer Institute, Queen Mary University of London, London, UK.
Department of Gynaecological Oncology, St Bartholomew's Hospital, London, UK.
BJOG. 2019 May;126(6):784-794. doi: 10.1111/1471-0528.15654. Epub 2019 Mar 18.
To evaluate factors affecting unselected population-based BRCA testing in Ashkenazi Jews (AJ).
Cohort-study set within recruitment to the GCaPPS trial (ISRCTN73338115).
North London AJ population.
Ashkenazi Jews women/men >18 years, recruited through self-referral.
Ashkenazi Jews women/men underwent pre-test counselling for BRCA testing through recruitment clinics (clusters). Consenting individuals provided blood samples for BRCA testing. Data were collected on socio-demographic/family history/knowledge/psychological well-being along with benefits/risks/cultural influences (18-item questionnaire measuring 'attitude'). Four-item Likert-scales analysed initial 'interest' and 'intention-to-test' pre-counselling. Uni- and multivariable logistic regression models evaluated factors affecting uptake/interest/intention to undergo BRCA testing. Statistical inference was based on cluster robust standard errors and joint Wald tests for significance. Item-Response Theory and graded-response models modelled responses to 18-item questionnaire.
Interest, intention, uptake, attitude towards BRCA testing.
A total of 935 individuals (women = 67%/men = 33%; mean age = 53.8 (SD = 15.02) years) underwent pre-test genetic-counselling. During the pre-counselling, 96% expressed interest in and 60% indicated a clear intention to undergo BRCA testing. Subsequently, 88% opted for BRCA testing. BRCA-related knowledge (P = 0.013) and degree-level education (P = 0.01) were positively and negatively (respectively) associated with intention-to-test. Being married/cohabiting had four-fold higher odds for BRCA testing uptake (P = 0.009). Perceived benefits were associated with higher pre-counselling odds for interest in and intention to undergo BRCA testing. Reduced uncertainty/reassurance were the most important factors contributing to decision-making. Increased importance/concern towards risks/limitations (confidentiality/insurance/emotional impact/inability to prevent cancer/marriage ability/ethnic focus/stigmatisation) were significantly associated with lower odds of uptake of BRCA testing, and discriminated between acceptors and decliners. Male gender/degree-level education (P = 0.001) had weaker correlations, whereas having children showed stronger (P = 0.005) associations with attitudes towards BRCA testing.
BRCA testing in the AJ population has high acceptability. Pre-test counselling increases awareness of disadvantages/limitations of BRCA testing, influencing final cost-benefit perception and decision-making on undergoing testing.
BRCA testing in Ashkenazi Jews has high acceptability and uptake. Pre-test counselling facilitates informed decision-making.
评估影响非选择性基于人群的 BRCA 检测在阿什肯纳兹犹太人（AJ）中的因素。
在 GCaPPS 试验（ISRCTN73338115）招募期间进行的队列研究。
北伦敦 AJ 人群。
18 岁以上的阿什肯纳兹犹太女性/男性，通过自我推荐招募。
阿什肯纳兹犹太女性/男性通过招募诊所（群集）接受 BRCA 检测的预测试咨询。同意的个体提供血液样本进行 BRCA 检测。收集社会人口统计学/家族史/知识/心理健康方面的数据，以及益处/风险/文化影响（18 项问卷衡量“态度”）。四项李克特量表分析了预咨询前的初始“兴趣”和“检测意向”。单变量和多变量逻辑回归模型评估了影响 BRCA 检测接受率/兴趣/检测意向的因素。统计推断基于聚类稳健标准误差和联合 Wald 检验。项目反应理论和分级反应模型对 18 项问卷的反应进行建模。
兴趣、意向、接受率、对 BRCA 检测的态度。
共有 935 人（女性占 67%/男性占 33%；平均年龄 53.8（标准差 15.02）岁）接受了预测试遗传咨询。在预咨询期间，96%的人表示有兴趣，60%的人表示明确表示愿意进行 BRCA 检测。随后，88%的人选择进行 BRCA 检测。BRCA 相关知识（P=0.013）和学位教育（P=0.01）与检测意向呈正相关和负相关（分别）。已婚/同居者进行 BRCA 检测的可能性高出四倍（P=0.009）。感知到的益处与预咨询时对 BRCA 检测的兴趣和检测意向相关。减少不确定性/保证是决策的最重要因素。对风险/限制（保密性/保险/情绪影响/无法预防癌症/婚姻能力/种族关注/污名化）的重视/关注程度与 BRCA 检测接受率呈负相关，并区分了接受者和拒绝者。男性性别/学位教育（P=0.001）的相关性较弱，而有子女则与对 BRCA 检测的态度呈更强的相关性（P=0.005）。
AJ 人群中的 BRCA 检测具有很高的可接受性。预测试咨询提高了对 BRCA 检测的缺点/限制的认识，影响最终的成本效益感知和接受检测的决策。
阿什肯纳兹犹太人的 BRCA 检测具有很高的接受率和采用率。预测试咨询有助于做出知情决策。
